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NeverGiveUp    5

Diagnosed in May 2017, I am 43, (symptoms for about year and half to two years)

Does anyone else have this?  when I get up in the morning, I am extremely stiff.  Like I had been riding in a car for about 24 hours.  I played college football and felt sore after a game all over then, but this is different, I have done nothing strenuous the day before.  Takes me awhile to get moving. It is even hard to put on clothes.  This is a little better since taking medicine, a few months ago it was very hard to get up and go to work.  

Curious on your thoughts...thanks

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Oh God, YES! Sounds just like me just prior to dx, also at 43. Some mornings,  I was so stiff that my legs nearly gave out on me when I got up out of bed. Felt like someone spent the whole night beating me with a hammer while I slept, especially my feet. I remember thinking, if this is what middle-age is like, I don't know how I'm gonna make it to old-age! It is VERY different from any other soreness, similar to how the fatigue is very different. I thought I knew fatigue with mild anemia; then I became pregnant. I thought I knew fatigue when I was pregnant; then I got Parkinson’s. Someone on here described it as "wading through wet cement." To that I would add, "while wearing a lead suit." 

Neupro patch was a game changer for me. Shortly after starting it, one of my friends remarked, "WOW! I wish I'd taken a video of you 2 weeks ago, because the difference is AMAZING!"

Edited by secret squirrel
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Yes.  I think part of the problem is that the dose I take before going to bed at night wears off while asleep leaving me in a massively "off" state when I awake, and until the first morning dose kicks in, . . . assuming I sleep until the morning alarm.  Tell your MDS.  There are a few things that can help. 

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My original neurologist suggested taking medication 30 minutes before actually getting out of bed...genius! So now I have one of those weekly pill keepers & a flip-top water bottle on my nightstand, and my phone alarm set half an hour before my clock radio alarm. Sooo much easier!

Edited by secret squirrel
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NeverGiveUp    5

Thank you for all the replies, I too thought the 40s are killing me.  helps to understand it is not my age.  But hurts to know what really is..  Sometimes I drive myself crazy trying to blame on another condition, just hard to accept.  

thanks,

NeverGiveUp..

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MurrayPD2    217

I had same exact thoughts!  I thought I wasn't going to make it in older age if this is how it is going to be.  Around the same age too.  

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MurrayPD2    217
On ‎6‎/‎24‎/‎2017 at 0:27 AM, NeverGiveUp said:

Thank you for all the replies, I too thought the 40s are killing me.  helps to understand it is not my age.  But hurts to know what really is..  Sometimes I drive myself crazy trying to blame on another condition, just hard to accept.  

thanks,

NeverGiveUp..

I blamed my back for the longest time

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swva    80

For years I couldn't sleep late because my mid and low back would be too stiff to stay in bed. Haven't had as much problem since starting Sinemet, until the last couple of weeks. I slept wrong, woke up with a stiff neck and have been sore in my neck ad mid back ever since. It seems to take forever for things to get better on my PD side.

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janey    7

My body does feel tight in the mornings. My feet feel strange. 

I begin with a 20 minute simple yoga series. Forward bends mostly. That helps me a lot.

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Peace    159

My ankles wont flex in the morning.  My first couple steps are not pretty. I read in a PD book written by an MDS that PWP should put their joints thru a full range of motion everyday. 

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Bluemoon    7

Same here, and I'm only 37 and always been physically active [sigh] ;)

I started with joint pains when waking up last year, only that I didn't know back then they were due to PD.

Now I'm starting to have a lot of stiffness on my left-side leg muscles (my symptoms are on the left side). 

Like you, my first steps into reality are not pretty, but the good part is that I know it's temporary.

I've noticed that, once I get moving, for the most part my pain goes away.

I also think it's a good idea to start the day stretching what is stiff and moving what hurts. A 20-minute yoga practice, for example.

 

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jb49    632

I agree with all your comments above. 

Mornings are worse.  I think parkys get stuck in a position in bed. I think it is normal to roll around in bed as the night goes on.  But when I sleep (If I sleep) , i don't move.  To lay in the same position for even 3 hours makes for morning tightness.  Mornings involve getting my legs out of bed. feet on the floor. Rise up to vertical, make sure that I am I balanced, and then do the   "Hurry to the Bathroom Parky Gotta Pee Shuffle, "  And then the wakeup meds, 2 cups of coffee, cereal, check the internet to see if any Rich, Lost Uncles are trying to send me money.  It takes awhile but my legs and feet, arms and hands get moving and I get dressed and get outside into the morning air..   If I get into my daily routine and get working at something I can feel quite normal and can even forget a bit about the Unwelcome Guest that we drag around with us everyday.  By night time, I become worn out and tired again.  The foot starts to drag, back is tightened, Hands slow down.  Yes, mornings are bad.  I usually wake up  at some point in the night, and f I am close to wakeup time, I will take some levodopa.  That helps some.

This leads to another point. Not to sidetrack your thread Never Give Up, from Kentucky (btw, when I was in grade school I would read every book about Daniel Boone that I could get my hands on)  I have now sidetracked my sidetrack...

When I encounter someone in town that I haven't seen for awhile, they may ask me how I am feeling, and will sometimes remark that I am looking good, (which may mean that I look better than they thought I would be looking), and I say thank you, yes,.  I am doing ok. And I bite my tongue and don't say, "Yes, I am pretty good right now, I have about another hour of good time, that is why I am doing grocery shopping right now.  But like Cinderella, I know things are wearing off with every tick of the clock and when the meds are working, I got to be getting things done and that is when you see me in town, outside, and functioning pretty good.  But you don't see me first thing in the morning.  Your opinion of my well being would certainly be different. 

And as another sidetrack.  If I feel good say for 8 hours a day, and thats when people see me, they are likely thinking he should be working!!  Follow me the other 16 hours into my cave and see if you still think I should be fixing your roof as I once could do.

good day to all,

jb    

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Linda Garren    725

Great post, jb.

Hi, NeverGiveUp.  Welcome to the Forum!  I'm sure you'll see a lot of responses here that will help you feel a part of us as to your symptoms.  Most of us have most of the things you mention.  Here are some of mine:

The shaking issue is a common one and can really, really be frustrating.  Any time I have something coming up at a specific time and I'm getting ready to go out for it, my hands shake uncontrollably.  Just a teeny-tiny sense of pressure as to doing things by the time I need to makes me shake.  Takes me about 3 times as long to do things when I'm like that. 

I also have the handwriting issue (micrographia), which is a cardinal symptom of Parkinson's.  Really weird, isn't it, to start out writing kind of normally and then see it get smaller and smaller, and less and less readable.  And mine then starts going uphill, too.  Does yours?  I remember my dad having trouble with handwriting as he got older, and he used to use his other hand to steady his writing hand's wrist so that at least what he wrote would be intelligible.  His writing looked shaky, but it was readable.  I've done that and found it to help, too.

And I have the same problem as you whenever I'm using a spoon.  I'm thinking that perhaps using a spoon larger than a teaspoon would help.

Putting nail polish on is one of my most difficult things to do.  The brush ends up polishing a lot more than just my nail.  And applying mascara--almost impossible (but I just do the best I can).  Am learning that it's okay to have things be just ok rather than perfect.  Not a bad lesson in life. 

And BRG, when you said, "Is it the multitasking involved with listening, thinking, finding the words, pumping those words to the vocal chords, and then getting the mouth to work?"  I had to laugh!  That describes so well what happens often when someone has said something that I want to respond to.  It is only later or the next day that I wonder why I didn't just say it.  It is so strange.  I've learned this is especially bad when I'm tired.  I can't find the words I want, in addition to not being able to put the sentence together that I want to say.  Several times before I knew I had Parkinson's I would say something to someone, and they told me they didn't know what I was saying.  I didn't understand why they didn't understand until I learned through Parkinson's information that it is called word salad when that happens.  Have others experienced that? 

I feel like an old person. Isn't 70 now supposed to be the new 50?!  I feel younger than I am, but my Parkie body doesn't coincide with that feeling.:-(

Edited by Linda Garren
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jb49    632

Good informative post Linda,   I know that hurry up feeling.  And more hurried I get, the more I shake and the slower I get.  You spoke of your Dad's shaking hands.  Did he have Parkinsons  Linda, or just an essential tremor?  I just wondered, I know that it is not supposed to be hereditary, but it seems like it happens a lot.  Have a good day. jb

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Linda Garren    725

Hi, jb.  I think my dad may very well have had PD, but he wasn't diagnosed with it.  I remember so many symptoms that I saw in him which I only since being diagnosed myself now realize were quite likely Parkinson's.  He was 97 when he passed away, so old age probably also entered into it.

We have a beautiful Sunday here in Maryland.  Clear, sunny, and comfortable, moderate temperature.  How is it up there in Canada Land?  :-)

 

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jb49    632

It is a coolish and pleasant 70 F Linda, with a bit of overcast and a choir of birds are singing in the trees.   It looks very very hot in your Southwestern States.

enjoy, your day.

jb

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Linda Garren    725

That sounds delightful!  What kinds of birds are in the choir?  And do you have only black squirrels up your way, or some grays, too?  :-)

Am off to cook a pot of porridge!  :-)  I shall dedicate it to you, jb, and to your wonderful, homey thread.

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